Watching: The Hidden Epidemic - Heart Disease In America

Chapter 7: Inherited Risk [7:28]

A family afflicted with a genetic disorder that accelerates heart disease sheds further light on cholesterol's role.

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Transcript: Chapter 7 - Inherited Risk

A family afflicted with a genetic disorder that accelerates heart disease sheds further light on cholesterol's role.

NARRATOR: The human toll, and deadly potential, of high cholesterol comes into sharp focus through patients like Robin Ivy. She is only 45, but she's had an onslaught of heart problems in the last few years. Her troubles seemed to come on suddenly, but their roots go back to her childhood.

ROBIN IVANY: I was about 14 years old and I had a physical, and that's when I first discovered that we had a cholesterol problem. I tried dieting, eating very little fat, running, walking, gymnastics, I did it all and I just couldn't get my numbers down.

NARRATOR: Robin's family is haunted by heart disease. Her grandmother has a heart attack in her 30's and three bypass operations. Her uncle died of a massive heart attack at 47. Her father had heart trouble, and all of this was from one cause.

DR. STEVE NISSEN: Robin has the genetic form of high cholesterol, what's known as familial hyperlipidemia or FH.

NARRATOR: Familial Hyperlipidemia is a genetic disorder in which the liver can't metabolize LDL, the bad cholesterol. Since LDL is not flushed out of the body, people like Robin have a dangerously high cholesterol level.

DR. STEVE NISSEN: And so from birth, her cholesterol levels were probably in the range of around 400. All those years of high cholesterol eventually results in plaque buildup in the coronary arteries.

NARRATOR: Robin was only 38 years old when she first felt like there might be something wrong with her heart.

ROBIN IVANY: I just felt so weak and so sick that I kept blaming everything under the sun. I have a sinus infection. I have a cold. Um, I just don't feel right. I didn't sleep enough. You know, little things just kept happening to me and I kept saying 'no, no, it can't be.' And I thought to myself, 'something's just not right.'

NARRATOR: Just a few days later she was rushed to the emergency room with a potentially lethal heart disturbance called Ventricular Tachycardia.

ROBIN IVANY: My heart is going crazy. Out of nowhere it started beating and squeezing as fast as you can imagine. It was just a rushing whirlwind. I remember on the table laying there thinking, this can't be me here. This isn't—this can't be happening. And at that point, I was afraid for my children. I was afraid to leave them. And I think that was the worst part about it, was—was just that reality, my mortality, I could be looking at it. And that's when I was scared.

NARRATOR: Catheterization of Robin's heart showed multiple blockages in her arteries, in some places as bad as 90%. She had bypass surgery two days later. She recovered and went home. Three weeks later she has another heart attack. She had a second operation to put a stent in a different blocked artery. But within a month that same artery was blocked again, and she needed a third operation. Over the course of a year and a half she had surgery five times and a radiation to her heart.

DR. STEVE NISSEN: She is really lucky just to be alive. Patients with the FH gene, they have the same disease that most of us in America get. What this form of extreme levels of cholesterol does, is it accelerates the disease process. It brings it several decades earlier.

NARRATOR: Robin as three teenage children, and because FH is an inherited disease, Nissen knew they, too, could be at risk.

DR. STEVE NISSEN: When I first met her I asked her to bring her children to see me, and I tested the three children, and they all had the same disorder.

Dr. Steve Nissen to kids: sound bite: Well, you're not—

Robin Ivany: sound bite: You're not in the principal's office.

Dr. Steve Nissen to kids: sound bite: You're not in the principal's office, you're actually—you know, um, you all think you're too young to be sick. I want you to understand what a healthy level of cholesterol is. You guys should really be under 100 for the bad cholesterol. OK, now, Ryan, your total cholesterol when I first saw you was 286, and you went up to 308 which tells me you're not taking your medication, period.

Dr. Steve Nissen to kids: sound bite: Now Thomas, I'm worried about you. I'm more worried about you, probably than any of the others.

Robin Ivany to kids: sound bite: Did you hear that?

Dr. Steve Nissen to kids: sound bite: Your cholesterol started out at 420, ok. So that's—you were the highest, so you have the biggest problem. Men who have cholesterol as high as you often have had a heart attack or bypass surgery in their late 20's or early 30's. If you don't lower your cholesterol it will happen to you. It's only a matter of when. If you don't take your medications.

DR. STEVE NISSEN: Robin reached age 14 in the early 1970's, and there were no strong drugs to lower cholesterol levels. The advantage we have with the children is we now have much more powerful drugs. And we have to convince the children that the same fate that happened to their mother—a heart attack in their 30's, or even younger—is in their future unless we get their cholesterol levels down.

KRISTIN IVANY: I worry a lot about my brothers cause I'm close with them and I really don't want anything to happen with them, and I'm just glad that we're on medicine now to try and at least stop it a little bit, like, help it.

NARRATOR: Robin takes many different medications to keep her cholesterol under control, but she will always have heart disease. There's permanent damage to heat from the heart attacks, and new blocks in her arteries could develop at any time.

TOMMY IVANY: I really want my mom to be around for a long time. I don't want to see her die at an early age just because of this.

ROBIN IVANY: Over the last three years I have found out that life is very fragile, and when I look at my kids, that is what matters to me. Having heart disease isn't- I mean, it happened, I can't change it, so I learned from it.